Will's cardiology appointment had its ups and downs today. Some of the ups were that he is now 10lbs 2oz (that's almost a 1lb weight gain in 2 weeks!), his EKG was good, both his blood pressures were good & his O2 was 100%. But the best up of all came during his echo.
Just like every echo Will has had, Dr. Awesome came in after the tech was done and did some "looking around" of his own. He said that if he didn't know Will's history of a hypoplastic and mis-shapen left ventricle, he would never know there was a problem. His left ventricle is now normal size and shape and is functioning completely normally. NORMAL! Normal not just in function, but in size and shape! He said that is an amazing thing that he could have never predicted. I'll chalk that one up to prayer! Because his heart is functioning normally now, he was taken off of his captopril, lasix & potassium chloride. This means his only meds now are his digoxin (for heart function), zantac for reflux and his vitamin! This also means I no longer have to wake him in the morning or at 11pm to give him meds! He will only have meds at 8am and 8pm! WOOHOO!!
The down also came during the echo. Since Will's coarctation could not be completely repaired during his surgery, it is one of the main areas of concern for Will. Dr. Awesome was hoping it would grow along with Will and not become a problem, but unfortunately it is getting slightly worse. At his last appointment the highest gradient they measured across the remaining coarc was 55...today it was 78. The things that baffles Dr. Awesome is that the echo and Will's exam are not matching up.
According to the echo, the still narrow part of Will's aorta should be causing a whole host of problems for him. He should be having trouble breathing, the blood flow to the lower half of his body should limited and we should see blue limbs and weak pulses, he should not be gaining weight, he should get tired very easily, and his left ventricle should be working much harder than it is. But he is not having any of those problems. He breathes fine, he is pink all over with strong pulses, he is gaining weight at a good rate and is awake for long stretches during the day, and his left ventricle is not hypertrophied (bigger due to overworking). His little heart and body is compensating for the still narrowed aorta.
Dr. Awesome is concerned that it may start causing problems. The plan, as of when we left the office, is to go back in 6 weeks for another exam, EKG and echo. In the meantime, Dr. Awesome is going to confer with the other ped. cardiologist and see what they think. If they feel something needs to be done about the aorta, then Will will get scheduled for another cath. That cath would be to get a better look and possibly try to balloon (stretch) the aorta. From what I understand (which still isn't much) that is pretty much the only option as of right now as far as intervention goes. The area that is still narrowed is too close to the blood vessels for his brain and surgery isn't an option.
We are praying that his aorta starts to grow better between now and his next appointment and that he does not need the cath and that his mild stenosis in the aortic and mitral valves stays mild. But we are also celebrating his normal 4 chamber heart! That still amazes me! 4 functioning chambers! We never imagined that would be how things would go when he was first diagnosed. Thank you to everyone praying for him and please keep it up!
*Also, please say a prayer for our heart friend Kolsen, he is still in the hospital.
Awesome news Lindsay!!! Normal is fantastic :)
ReplyDeletePrayers will be said for Will and Kolsen. The power of prayer is an amazing thing.
I've lived 31 years with coarctation and aortic stenosis (and a bicuspid aortic valve). Its amazing how the body learns to cope with what its given! Will will continue to amaze you.